Tag Archives: ASD

Beneath the Mask lies …. who?

In November 2014, when I was forty eight years old, I was diagnosed with autism. Since then I have been trying to write something about being diagnosed so late on in life, but I seem to have a complete block these days when it comes to writing, even though writing is something I have done all my life. My adult autistic son keeps asking me to write something for his blog, and I have tried so many times, but I just seem to blurb out a load of nonsense and not have the energy to edit or try to make it make sense in any way, and so there is never anything for the blog from me.
I have not had time to process what an autism diagnosis means for me – if it is a good or a bad thing – and do I feel better or worse for having this diagnosis? I thought it would it be a good thing, and give some meaning, some explanation for my past, and that I could use it to move forward in my life, armed with the knowledge that I am not broken, or a failure, or that life is wasted on me as I have always thought, but that I am autistic, and that is who I am, what I am, what I have always been, and that I finally know and understand who and what I am. That I could claim autism, being autistic, as my identity.
But nothing could be further from the truth.
In all honesty the one thing that has become clear to me since being diagnosed as autistic is that I have no idea who I am, what I am, or where, or even if I fit in to the world.
Every day it is becoming clearer and clearer to me that I have masked and faked my way through my life, and that no one really knows me, and I don`t even know myself. I feel as though I don`t exist outside of what I do for other people.
This is not to say that I have not had genuine feelings for people, that I didn`t care about them or love them, and the things I have done for them didn`t mean anything to me. That`s not what I am trying to say.
I`ll try to explain, but I am not sure I can.
It`s like from a really young age, probably four or five, I just didn`t know what to do, how to be. It`s like I read the hand-book on how to be a good daughter, sister, friend, partner, Mum, human-being, and I followed it to the letter with no veering from it, no time to think about myself or my own needs. I think I have always been, or tried my damndest to be, exactly what my parents needed me to be, exactly what my siblings needed me to be, exactly what my ex-partner needed me to be, and the perfect Mum. I have always given a hundred percent to every person in my life, every job, every action, with no room for error, no room for mistakes, no room for me.
It is like putting make-up on each day before you can face the world, afraid to let the world see you, who you really are, what you really look like, because you don`t really know who you are, but you know that you can never measure up to other people. And to be honest you don`t know what the fuck you should be doing, or how you should be doing it, so you watch, you observe, you learn, you copy and you do, just to fit in. But you can`t copy and do everything your peers do, at whatever age and period in your life you happen to be, because you can`t get it wrong. Mistakes are not ok. You have to be the perfect daughter. You can never put your own needs, or feelings, or wants above what your parents need from you. And you have to be the perfect sister. You can`t be selfish or think of your own needs, and no matter how overwhelming or exhausting or damaging it is, you have to do what your siblings need you to do. And friends? Well you have to be there for them constantly don`t you? You have to follow their ideas, do what they want to do, put off what is important to you and ignore your own wants and needs and prioritise theirs don`t you? And in a relationship? Well you can`t argue or shout or hurt someone`s feelings. You have to absorb all the shit, but never dish any out. And being a Mum? There`s no room for mistakes, you have to be completely selfless and give everything you have got, and never, ever put your own needs above those of your child. And society at large? Well you always have to be polite, and kind, and caring and put yourself out, even for complete strangers. And when people: family, friends, partners, work colleagues, people in general treat you like dirt, well you just have to take it and never, ever retaliate because the idea or hurting someone`s feelings – even if they hurt yours on a daily basis – is just unbearable. And they are the un-written rules of the metaphorical `hand-book` on how to be a good human-being, except, they are not. They are the rules I imposed on myself because I didn`t know how to be me, how to look after me, as well as being a good daughter, sister etc. I didn`t know how to be a real person, what I was supposed to do, so I subconsciously developed a persona of trying to be the perfect everything to everyone, to make sure everyone else`s needs are met. I still do it. I don`t know how to not do it.
Am I making any sense? I guess what I am trying to say is that because I was so confused and bewildered by life, all my life, I kind of learned how to be the perfect daughter, sister, friend, partner, Mum, employee, student, citizen, always trying to do the right thing by everyone else, that I never really learned anything about who I am? And somehow I have reached the age of 52 feeling as bewildered and confused by life as I did when I was five. And somehow I have blundered through to reach this age without ever really doing anything I have wanted to do (or I`ve had short bursts of trying but never really succeeded with anything) and I have never really known or understood me, who I am, what I want. And I don`t think that anyone else knows me at all, apart from my son. I think my parents knew me pretty well as their testament to how I was as a child went pretty far to me being diagnosed as autistic. I have always been extremely close to my parents, but even with them I had to put on a front a lot of the time when they needed me to help my siblings, and I couldn`t say no. I could never say no to my parents, or `what about me?` I always did exactly what they needed me to do to support my siblings, and I never once complained, or told them how hard it was for me to push myself to do the things they needed me to do.
I know I am not painting a very good picture of myself here, but I just don`t know how else to explain it. I am not the perfect anything, but I have nearly killed myself trying to be.
I keep seeing hashtags about `taking the mask off ` on Twitter, and being your true, authentic, autistic self, but I have many masks, for many different situations, and although I feel they are slowly destroying me, if I take them off what then? How will I go to the shop to ask for something? Make a phone call? Have an electrician or a plumber in the house? Order a taxi? Get my haircut? Interact with my family, neighbours, and society in general? Make sure my son`s needs are met?
Without the masks I can`t function, and if I don`t function I can`t support my son, or even do anything.
I am all for autistic people getting on with being autistic, and not having to go through the stress of trying to fit in to society, not having to `mask`, but if I don`t have my masks then what do I have to present to the world? I can`t present `Me` because I have no idea who that is ….

Jane Donlan

You can find my  sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

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Is this illness or stress?

Autistic people tend to get quite stressed with sensory issues, changes in routine, the need to plan, anxiety build-up, and social communication all playing a part. Stress can and often will have a physical impact: this might be stomach pains, headaches, sickness and more extreme symptoms. I have found this out myself on more that one occasion. Headaches, feeling sick or having pains in my stomach is far from uncommon, and I know by now that they are all signs of an overload. When I was around five or six, before I was home-educated, I would have awful pains in my stomach and feel as if I were going to throw-up knowing that I would have to go to school the next morning. If anyone had seen me they would have thought I was ill, but this was something I felt every night and every morning before school. It was not an illness, it was stress and anxiety brought on by my hatred of school. In more recent years there have been two times when after a big event, for example, a talk or my book launch I have found myself racked with stomach cramps that have led to me being unable to anything, but lie down and wait for them to pass. These have not come on an hour or two after though; the first lot came the night after my book launch, and the second lot came the morning after my talk. I have not had anything like them at any other time, and despite how bad my stomach can get, this was much worse. The first time this came on after my book launch I knew I was going to be sick; it was around eight when I first started feeling the pain, and I was up till after four in the morning, throwing up four times. The next morning I was fine – they were gone as soon as they’d arrived. The second time I was not sick, but again the pain started when I woke up and I could do nothing but ride it out. By the end of the day I was almost back to normal.

It is my belief that these pains and the sickness were brought on by the build-up of anxiety and stress that led up to each event. Add to that the social pressure and sensory impact of the two events, and you can see why the stress and overload might be so great it has a physical impact on my body.

In fact sometimes it can be all too easy to put something down to stress or anxiety or overload. On Monday night I started to feel pain in my side and stomach again, not as bad as the two times talked about before, but the same kind of pain. I had been to two quite stressful and overwhelming appointments in the week leading up to this after months of not doing much at all, so I put it down to that. I had been trying to get back to normal after a long time of not doing anything and I had been doing well, but now my body was telling me not to push it. So when I woke up the next morning and the pain was still there I cancelled the appointment I had for that day, and decided to rest. In fact the pain lasted most of the week. I am free of it today, but it’s been there to greater or lesser degrees since Monday.

On one hand the fact that I was able to see when things were too much, and take a step back with out pushing myself too far is a good thing. In the past I have not always been able to do this, and although I was in pain this time there was no throwing-up, and the pain was not anywhere near as bad as it has been in the past. But it made me think; as soon as I felt that pain and the feeling of sickness that came with it in the first day or two my mind instantly said “stress and overload”. On the third day I thought about the idea that it might be a strain of some kind, but that would not make sense as I felt it in two places, and as I say it also came with a feeling of sickness. But I do wonder how do you tell normal pain and feelings of sickness from pain and sickness brought on by stress? I knew what I had been doing in the week leading up to getting the pain for the first time so I guess it makes sense that my mind would jump to that. But in doing so I run the risk of ignoring a real physical illness that could get worse the longer it’s left. It’s a hard call to make; you do not want to go running of to the doctors every time you have a bit of pain, and it is often good to let things resolve themselves on their own, but even if leaving something will not cause any harm and it does fix itself, I am still left with the question – am I feeling pain as a result of stress, or is there something else wrong?

The pain induced by stress can come in all forms, and sometimes last for days so at what point do I say there might be something else going on? When you add to that my high pain threshold, and the way I tend to get used to feeling a certain way it’s hard to find that point. When I talk about getting used to feelings what I mean is (and this might apply to other autistic people) I mean that I find myself getting used to feeling a certain way very quickly. This has often led to things going unnoticed for a long time in the past. I have talked in blogs before about the infection I got in my foot at one point. When I first began to feel the pain I brought it up, but then within days I was just used to feeling pain in that toe, to wincing every time it touched my bed covers, or I had to put my shoes on. As strange as it might sound I did not think about the pain in-between those moments; I was aware of it and aware that it had not always been that way, but it was weeks or perhaps even a month after first bringing it up that I thought to tell anyone that it was still causing me a lot of pain. Now of course that was nothing to do with stress, and I did not think for one moment at the time that it was. But you can see how it might lead to issues at some point; a pain starts and I put it down to stress, it stays for a few days but stress pains can do that so I leave it, and it would be easy for me to just adapt and not think too much about it from that point. I do know that this might not make any sense at all to some of you, but perhaps some other autistic people might understand what I am talking about.

I have no idea when I start to feel pain if I have hurt myself some how, if there is something else going on, or if it’s due to stress. So I have a day or two of relaxing to try and de-stress and the pain goes away, but who knows, perhaps that is just coincidence? Anyone could feel stress-related pains from time to time, but when you are autistic they happen – at least in my case – quite a lot, and to make things more complicated they do not always feel the same. Sometimes it’s feeling sick, sometimes it’s headaches, and sometimes it’s feeling dizzy or faint, and much more. In the worst case scenario this could lead to me putting something down to stress that is in fact a symptom of something physical. But even if that never happens it is still very irritating to never know the source of any pain that I might feel, to have to make a guess and hope that it is right.

Does anyone else find this hard? Do you know when something is down to stress, and when it’s physical?

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Why I have always hated getting my hair cut.

I have always hated having my hair cut. I have no memories of ever going to have it cut without having to be talked in to it, and spending the whole time wishing it was over. This is far from uncommon with autistic people, and there are a few good reasons for that. I thought I would talk a little bit about what makes getting my hair cut so hard for me – as always bear in mind these will not apply to ever autistic person, and there might be things you find hard that I have not thought of.

The sensory impact: I have talked a lot on this blog about sensory overload and the impact it can have on me and other autistic people, and I realise more and more as I get older quite how much of an impact it has on me day to day. When you go for a hair cut you have someone touching your head and hair. They might be doing this for ten minutes or forty minutes, but in my case at least it’s much more contact than I would ever normally have with a stranger. I do not like to be touched by strangers, nor do a lot of other autistic people, so having my head pushed and pulled, my hair touched, pulled and so on is much more touch than I am used to.

This is why I never have my hair washed before I have it cut – I do that at home before I go out. There is more than enough touching and moving of my head going on without washing it too!

Having to sit there and let someone mess about with your head and hair can be very stressful, and easily lead to sensory overload. On its own the touching is more than enough to bring on an overload, but that is not the only sensory input that comes with a hair cut. There is background noise and often lots of it: talking, hair-dryers, phones going off, and people coming in and out the whole time. More often than not when you are sat having your hair cut this will be coming at you from three sides at once. So when you think about being sat in a busy, noisy environment with someone touching you, and pulling your head this way and that it’s no wonder that, for me at least, hair cuts lead to overload.

Talking: I have been quite lucky the last few times I have gone to get my hair cut as no-one has tried to talk directly to me too much. But it is not uncommon for a hairdresser or barber to start making small talk. “Where have you been on holiday?” is a classic. I understand why they try this small talk; a lot of people do enjoy it, and it can be seen as friendly and therefore encourage people to come back. Add to that the fact that the person cutting your hair works with the same people every day, and might have been working in the same room doing the same task for hours before you come along – it’s not that I do not understand why they might want a chat it’s just that I hate small talk as the best of times. As I have already said having my hair cut can be an overwhelming experience anyway, so the last thing I want to do in the middle of it is start talking. But as I am sure you all know it’s so hard to get out of small talk without being seen as rude. I have never quite understood this; if I were to say that I did not want to talk that would be seen as rude, but chatting on at someone who is basically a captive audience for twenty minutes about inane nonsense when it is clear they do not want to talk is not viewed as rude? Perhaps it’s just me, but that seems a bit strange. Sadly even if no-one is talking to you there still tends to be a lot of talking going on between other people. A lot of people do see going to get their hair cut as a chance for a good chat so even on days when I do not have to try and make small talk I tend to find that there are others all around me making small talk that I can not help but hear, and which only adds to the sensory overload.

Change: We all know change can be hard for autistic people, and the whole point of a hair cut is to change something about yourself. Even if it’s only getting it trimmed back down to its normal length there is still going to be a change in how you look. It might not be a change that we think about very often, but for most of us it’s one of the few things that we do where we actively change something about ourselves. The worry about this change might not even be something we are aware of feeling. For me I do not worry about what I will look like after my hair cut, but I do have a hard time asking for what I want. I know I want to change something about my hair, but I never know quite how to say it “Like it is now but shorter” is about as good as it gets for me, but they always seem to need to know more. As it’s not something I care about or spend any time thinking about I never know what to say when asked for more detail (I forget between hair cuts what I asked for, or what was done). This can mean that although I am not worried about the idea of a change on the outside, when I am confronted very clearly about what I want to change and how, I often find I have no clue and basically just want to keep my hair as close as I can to the way it was when I went in.

Not being able to fade in to the background: This one is a bit more vague than the rest, and at least two of the other points can be tied in with it. When someone is cutting your hair, working on your head, you can not just fade in to the background, and not be noticed. People will keep touching you, they will keep talking to you, you will be asked what you want, and shown how it looks at the end, and asked to say something about it. However quiet you stay you will still have to deal with all those things. Often when I become overloaded I will just stay quiet and kind of fade out, trying to stay in the background and not worry too much about what is going on. But when the focus of an event, or room is on me I can not do that. Even for something as small as a hair cut that power is taken away leaving me to deal with the full impact of what is going on without the option to bow out of it. When I feel I am at the point where I just want to close my eyes, not talk, and not have anyone talk to me there is still someone standing right behind me pulling at my hair, talking to me, and asking me to pass judgement on the haircut.

So overall as you can tell hair cuts are not fun for me, and as I said at the start I know that this is true for quite a lot of autistic people. I keep my hair longer now, and while that means my hair cuts can take longer they are also a lot less frequent. But even when my hair was short, and a cut did not take long at all I still hated them. I know that I need them, and I am willing to have them (although I do put them off for as long as I can) but that does not mean I have to like them.

How do you feel about hair cuts? Is there anything you dislike about them that I have not put in this blog?

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Autism and the Heatwave: Why I find the hot weather so hard.

As I am sure you are aware the UK has been in experiencing a heat wave for the past few weeks, as has most of Europe and North America. Temperatures have gone in to the early 30s in the UK on some days, and while it has been a bit cooler the last few days the temperature is set to rise again for the coming week. Some people have been enjoying the heat and some have been putting up with it without much complaint, but it has driven home to me just how hard I find the hot weather. At times when the heat is too much I find it hard to do even the most basic of things. Let me explain why the heat impacts me so much.

I talked in a blog a while ago about how a cold for me is worse than pain a lot of the time. A cold brings with it a whole host of sensory issues, and sensory issues more than pain make it hard for me to do things, and lead to overload. The heat is the same; I sweat, my clothes feel uncomfortable on me, my skin is hot and overall my body feels different to how it feels for most of the year. These feeling might not mean much if you are not autistic, but when you do have sensory issues having your whole body react and feel different to the way you are used to can have a big impact. It’s not just that I am overheated and sweaty, it’s that those feelings – the feeling of sweat on my skin, the heat of the sun, and so on – feel wrong. There is no basic state you can go back to when sensory impact becomes too much. On a normal day I might go outside and find things too noisy or overwhelming, and come home. After a few hours of rest on my own, controlling my own sensory input, I would be able to get back to my basic level. There would not be any unwelcome sensory input, and that would help me avoid overload.

But when it’s too hot I find I can not do that. How can I go back to a basic day to day normal level of sensory input when I am sweating just sitting at my desk, when even just doing nothing is causing a high level of sensory input I would not normally have? And it’s not just that: it’s the smell of sun-cream, the constant noise outside (playing, cutting grass) and all the sounds, smells etc. of people trying to make the most of the sun. It might not sound like a lot, but a large part of it is the fact that for nine months of the year there is none of that, and then it is all day, every day, and that sudden change makes it harder even though you know it’s coming. This year it has also been the sheer unrelenting nature of the heatwave.

The more sensory input the more overloaded I become, and the harder it becomes to do anything.

Along similar lines I find it impossible to get comfortable in the heat. I tend to like to wear the same things all year round, but even when I do make concessions to the heat and wear a T-shirt without a top over it I find even that sticks to me. If I want to go outside or I have something I have to go to it’s even worse as I have to put sun-cream on, and there is not much I hate more sensory-wise; the feel, the smell and the way you can feel it on your skin for days. Too hot, too sweaty, clothes too uncomfortable, and extra sensory input from all sides – it’s pretty hard to feel comfy or relaxed. Even taking a shower will not always help. I find that if it is too hot I start to sweat when I get out of the shower, and I always feel the need to be fully dry before I put any of my clothes back on so this can make it quite hard. I feel the benefit later in the day, but when I get out of the shower and start getting dry, and find myself unable to fully dry off due to sweat it can make me feel even worse!

There is also the fact that it becomes harder to stick to a routine. Partly because of the heat and partly because of other peoples reactions to it. I might have a plan for the week only to find that it is far too hot to do something I was planning to do. This might be saying that I will clean the house before lunch only for it to be 30 degrees. I start thinking “Well if I do that cleaning in this heat I am going to need a shower, I don’t have the energy to do all that now”. Little things like this can add up, and make it hard for me to know what to do and when. Things that are not normally hard to do become hard because of how badly I cope in the heat which means it takes longer to build up to them, which can throw my whole plan for the day off course.

Add to that the fact that other people might change the plans, “Do you really want to do that on a nice day like today?” “Would it not be better to do something outside?” As soon as the summer heat comes you will find people wanting to change their plans and routines, which in turn can mess up your plans and routines.

Of course it’s not only autistic people who do not enjoy the heat, and not all autistic people dislike hot weather, but speaking for myself I hate it. I do like the way things look: clear bright blue skies, bees buzzing around, and sunlight shining in through windows, but other than that there is nothing fun or nice about the heat for me. It always knocks me back somewhat, and it takes me a while to readjust to it, and be able to get back some kind of work routine, but this year has been much worse than normal. Partly due to the fact that I have been having a hard time making and sticking to a routine anyway (hence the lack of blogs) and partly due to the fact that it has been so much hotter than normal this year. I was hardly able to do anything for about two weeks with the heat. I have been able to do a lot more over the past week due to working out a new routine that works for me and sticking to it, but for a while there the heatwave pretty much stopped me from functioning. It looks as if summers like this are here to stay though due to climate change, so in the years to come I might have to work out more ways of dealing with the heat.

How does the heat affect you? And if you are autistic and find the heat hard what do you do to help yourself deal with it?

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Why my anxiety levels rise when people come to do work in the house.

Over the past few weeks we have had to have quite a few jobs done around the house. As these are jobs we cant do ourselves this has meant having to have tradespeople around such as joiners,and electricians. You might think that having people in the house and the noise they make when working would be the worst part of this, and for some autistic people it might well be, but for myself – and I am sure for some other autistic people – the worst part by far is waiting for them to come. I don’t just mean waiting for a few hours for them to arrive on the day either. Let me explain what I mean.

In my mind when I make a plan it’s a set thing; if I have to be somewhere I want to know the day and the time I need to be there, and the chances are I will be early. If I can’t make it I will get in touch and give as much notice as I can. You might put that down to my autism and you may well be right, but I also think it’s just basic courtesy. If you are going around to someone’s house you should at least tell them when you plan to arrive! Yet this basic information is almost impossible to prise from most people who do come around; want someone to come around and do a basic job in the house? They will be with you some time early next week. Well what day is that? Monday, Tuesday at the latest? Unless they get busy with something else then it might be Wednesday. OK, and would that be morning or afternoon? Morning, unless they run late then, afternoon.

Ah, OK, cool, just let me put three days aside for a half hour job then. Due to my autism it is almost impossible for me to focus on doing anything if I know I have someone coming to the house. As strange as it might sound to non-autistic people on a day when I have workmen around even though I am doing nothing, and they are doing all the work just having them come around and do the job takes up all my energy for that day. The waiting in, the knowing I will have to have some level of social contact, the not knowing how long the work will go on for, the noise, the disruption of having people in my house and what that does to my routine. Having to set one day aside to deal with this is bad enough, but it must be done in order to get things done around the house. But if this goes on for three or four days as it will if people are not clear on when they are coming, then you can end up wasting half the week being sat round feeling anxious not knowing if someone is coming around or not!

I am not quite sure why people find it so hard to look at a diary and see what day they are free before making plans instead of putting aside big blocks of time where they may or may not come around if they feel like it. It means instead of the anxiety building up over one day, and then being able to get back in to the swing of my routine the next day, you end up having two or three days of build up and if you’re lucky then having someone come to do a job. Which brings me on to the next issue…..

If you commit to being somewhere at a set date and time and you can’t make it you have to get in touch and explain that right? I think we can all – autistic or not – agree on that. But if you just say you might be somewhere that seems to be some kind of get-out clause. If you said you might come around at six and you realise you can’t you don’t have to ring up and tell the people whose anxiety has been building up all day because you only said you might be there. Never mind the fact that they may well have changed plans for you, changed their routine, waited in and are going to be on edge for the evening in case you turn up. It takes a few seconds to send a text saying “Can’t make it, call tomorrow to rearrange.” And yet the amount of times someone has just not turned up without any form of contact is, for me at least, shocking. Again this is not just about the impact on my autism, though that can be huge. Waiting in all day unable to do anything only for the person not to turn up without any contact to let us know of this change of plans does add to my levels of stress and anxiety, but it also means the day ends with me knowing I have to do it all again. Not only do I have to do it all again, but when I do there will be even more anxiety because now who ever it is has a track-record of not turning up. So I will half expect them not to turn up again which just adds a whole new level to things. But as I say it’s not just that. Again it goes back to common place courtesy: make a plan, make it clear and then stick to it. If you can’t then have the decency to let who ever you made the plan with know.

And when I say make a plan I don’t mean text the night before and ask if you can come around and do a job. The answer will always be no. I need notice, not a few hours notice, but a few days notice at least. This should not be too hard to understand or to give. I do understand that for most non-autistic people this would not be as big a deal as it is for me, but still people have work or university; they do things with their lives’s so you would think that a few days notice would be important for most people. Again it comes back to the fact that making a real plan, showing that you will take the time to plan things out, and then stick to them is always better than doing things on the spur of the moment.

It is hard to get someone who is not autistic to fully understand how disruptive and stressful having someone come to the house to do jobs can be. The levels of anxiety and the change in routine make it very hard, but I honestly believe that if it were more clear and well arranged the stress would not be half what it is. If I knew someone was coming at seven on a Wednesday evening then yes it would still be hard to focus that day, yes I might still feel overloaded once they had gone, but at least it would then be over. A plan would have been made, I would have be able to make plans for that day knowing that work was going to be happening, and how that would make me feel and from the next morning I could be back to my routine.

But if I have to put aside two or three days in case someone comes around only for them not to come around, and then I have to go through the same act the next week just to get one small job done I can lose the best part of two weeks just for an hours work. As well as driving my stress levels up this makes it much harder to get the jobs done on the house that need doing. If it takes two weeks of stress to get one job done I want the next few weeks to catch up on work I missed due to the change in my routine, plus the last thing I want to think about is trying to make more plans to get jobs done. This means other jobs that need doing get left because I just can’t put up with another two or three weeks of messing around just to get someone to come round and do them.

I understand that not everyone knows about autism and even if they do they don’t know I am autistic, but again I think what I am saying should be true in most cases. No one wants to wait three days to find out if someone is coming only for them not to turn up, no one wants to be told someone will be there some time between ten and seven, and no one wants someone to cancel or change plans without notice. The difference is for most people it’s a minor irritation, but for myself and other autistic people it can be a massive disruption and cause of stress/anxiety; something that takes an already stressful event and makes it ten times harder than it needs to be. I can do work around dealing with the stress of knowing someone is coming, and I can try and get myself to a point where I can do other things instead of just wait. But it can’t all be me, at some point I need people to meet me half-way, and at least let me know what day it is I will have to prepare myself for!

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

There`s no excuse for using bleach as a `cure` for autism.

Once again there are stories in the news about parents making their autistic children drink bleach in a vain attempt to “cure” them of their autism. I don’t think I really have to say why this is so bad, or the harm that it can do. We all know you can’t “cure” autism, and I would hope we all know how bad drinking bleach can be. The so-called cures at best burn your insides and cause immense pain, and at worst put people’s lives at risk. As I say I should not have, in 2018, to be writing up an argument for why giving bleach to children is not a good idea. But it seems to keep coming up. Every few months or weeks there will be a new story about it in the news, or online. Someone else in the UK or USA has worked out they can make some money out of selling a “cure” for autism. So they make up a mythology around it – namely that autism is caused by parasites of the gut, and that drinking the cure will kill the parasites, and therefore cure the autism. Of course there is no truth to any of that.

The people who try and sell this just see a way to make money, and don’t care who they hurt as long as they get paid. There have always been people like this, and there always will be, it’s just a sad fact of life. People who will pray on others fears and exploit them for money, no matter the cost. What worries me more is why the level of fear is so high in the first place?

This is not meant to in anyway excuse the people selling the bleach, but the truth is that people are willing to buy it off them, and feed it to their children. OK they might not know what is in it, but lets take this point by point.

  1. We should all know by now that there is no cure for autism. That is just a fact. We see so- called “cures” all the time, and they range from diet to bleach. But if you have an autistic child you owe it to them, and to yourself to make sure you fully understand what autism is. It is not something that can be cured – this is not a statement about alternative medicine vs real medicine, it’s just a statement that whatever the “cure” it’s a lie. I don’t think it’s too much to hope that parents should understand and grasp this most basic of facts if their child has been diagnosed.

  2. I have seen more than a few comments along the lines of “ This is shocking, you can understand why the parents got so desperate, but it’s still shocking.” My reaction upon seeing comments like that is always the same “No, I can’t understand why someone would want to poison their child.” I am not trying to make out like autism is always a good thing, or that it can’t be hard at times. I could not even begin to count the days of my life that have been ruined by meltdowns, overloads and other autism-related stresses. Autism is never wholly good, it always comes with some bad parts that make life harder, and yes can make the lives of the parents of the autistic child harder too. Add to that the worry a lot of parents have about how the world will treat their child after they are gone, the knowledge of how cruel the world can be to anyone who is different/vulnerable, and the wish to spare their children from that, and we can see why some parents might feel anxious about their child’s autism. But again I say, even knowing all of that, I can not for one second imagine why someone would feel that slowly poisoning their child would help make things any better. I think sometimes there is a desire not to attack parents, and to even sympathise with them to a point, but there has to be a limit to that. I have seen the same kind of comments on stories where parents have killed their autistic children in premeditated and brutal murders “ Well it’s sad, but you can understand what drove them to it”. This has to stop. I don’t care how hard you think your life is, I don’t care how stressed-out you are, killing or hurting your children is beyond the pale in the eyes of any decent society, and it’s about time we stopped using being stressed-out with the child’s autism as a way to bring sympathy back to the perpetrator.

  3. There is still a fear of autism, that much is clear. Despite all the good work autistic people have tried to do over the years to convince others that our lives are worth living, and that we are not something to be feared, it’s clear that old-fashioned attitudes are still worryingly prevalent. To see that fear in people who have never had any contact with autistic people is worrying enough, but to see it in people who’s own children are autistic is the real worry. Have these parents not taken the time to read the books, articles and blogs written by autistic people that debunk pseudoscience, and talk about how autism is not something to be scared of? They must know their children are autistic, but it feels like they would rather talk about made-up cures on secret Facebook groups than face up to facts, and educate themselves. Ignorance, as we know, is a great breeding-ground for fear. Far from being bliss ignorance is like a fog through which we can only glimpse the shape of something we are dimly aware is out there, and of course when half-glimpsed through fog anything will look scary. But wilful ignorance of the kind where you choose to ignore decades of research in to autism and pretty much everything ever written on the subject by autistic people, and believe that feeding your child bleach will make everything OK is like being given a torch to illuminate a path through the fog, and deciding instead to hurl it away from you at one of the shapes you can’t quite make out.

You would be forgiven for thinking that the deeper we go in to the 21st century the more we as a society would reject pseudoscience, and outright lies about health. But that’s not true. This can be seen in the resurgence of the anti-vaccine movement as well as in the desire for wilful ignorance in regards to the use of bleach on autistic children. We should be living in a time where autism and autistic people are accepted and understood, and it’s true that we are more than ever before. But it’s also clear that those levels of acceptance and understanding are nowhere near as high as they need to be. There is still far too much fear out there, and sadly, despite the best efforts of autistic people, it does not look like this is going away anytime soon. While there are still parents out there who choose to shout down the voices of autistic people who dare to suggest that autism might not be the worst thing under the sun, while at the same time choosing to buy in to a scheme that is only going to hurt, and potentially even kill their child out of fear of something they choose not to understand, then there is still work to be done. I would love to live in a world where a story of parents forcing their autistic children to drink bleach is shocking, and not just repetitive. Because that’s what makes it even more scary, the fact that we have all heard this story before, and I know for a fact we will hear it again, and more than once before 2018 is over.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

The sensory impact of a cold.

I have talked in the past about how in the days before coming down with some kind of illness I can be prone to meltdowns, almost as if I am reacting to the illness before I even know I am ill. When I say illness this can apply to anything, even a simple cold like the one I woke up with this morning. But I have not had any meltdowns for some time now, and I felt fine in the days leading up to this, but that’s not what I wanted to talk about in this blog. As I say I don’t always have a meltdown before I come down with something, but having a meltdown or being stressed-out/ grumpy with those around me can be a sign I am coming down with something. But what I noticed this time that I have not thought too much about in the past, is how much worse my sensory issues tend to get when I have a cold.

I find it so much harder to be around others (I have spent most of today in my room) and I think this has quite a bit to do with the sensory impact of a cold. Most colds don’t come with any pain (if you are unlucky you might get a headache) but they do hit your senses. Take the one I have today – no pain at all to speak of, but a blocked nose, a fuzzy feeling in my ears, and a constant strange taste in my mouth. At times I find myself getting hot and starting to sweat, and at other times my eyes start to water. I have noticed today more than ever before how stressful those things can be. It feels as if I can only spend a few minutes around other people before I have had enough, and I start to snap at them, or just have to go and be on my own again. That’s not because of how bad I feel, as I say it is only a cold, in fact if I were in pain I know that I would cope much better. I have a high pain threshold and can keep quite calm when in pain. But I think the key thing about a cold is how it hits all your senses.

It’s hard to explain, but it’s as if my body is having such a hard time processing all this extra sensory input that I hardly have any space left for any more sensory input, such as people talking to me.

I tend to find that pain is much more easy to deal with; it might be bad but it tends to stay in one place, and it’s easier to cut off from the rest of my body. Even when I have been in the worst pain of my life I have been much more able to sit and talk with people, and process what they have to say to me than I am when I have a pretty normal cold. So it’s not just a case of me feeling sorry for myself. But when all your senses are working overtime, thrown off balance and struggling to keep up with what is going on it’s hard to have any space/ability left to cope with other day to day sensory inputs. This is something I have never thought much about before, but when I talked to my Mum about it she said that she often feels the same thing. Because I am autistic I do not process sensory input in a passive way, and therefore the more inputs I have to deal with the harder my mind has to work to process them all. Processing what someone is saying to me takes a lot more active engagement for me than it would for someone who was not autistic, and when I am thrown off balance by strange sensory input (such as feeling suddenly very hot, or having a blocked nose and the strange feelings that come with that) it seems to have very little energy left to engage with, and process anything else.

You could make the argument that if you feel ill, even if it’s only with a cold, then you are going to be more irritable and less able to focus anyway, but as I say this is something I have noticed specifically in relation to colds.

As soon as my nose starts to clear, and my ears no longer feel as fuzzy I can get on with much more normal stuff again and spend time around people, but when I am fully in the grip of a cold I can barely even be around others for a few minutes before I am overloaded, and need to get away from them. I find myself much more able to keep working through pain than I am to work with a cold, and overall colds are much more disruptive to me than just about anything else. I do think there is a link between the sensory effect of a cold on the body, and my lack of ability to deal with day to day sensory issues such as people talking to me when I have one.

I wonder if any of you have noticed the same thing? Does a common cold have more of an impact on you than feeling real pain would? And if so do you think that impact is due to the sensory impact of a cold?

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Why I have been avoiding shows about autism.

Last year I watched The A Word and did a review for each episode, but this year I have not even caught up on the first episode of series two yet. This is in part due to me being busy and having a lot of other things to watch, but it is also due to the fact that I find it quite hard and cringe-inducing to watch shows/films that seek to portray autism. That’s also why I never got around to watching Atypical, despite thinking that I should write something about it. So why have I been avoiding shows with autism in them? And should I keep doing so?

There has been a bit of patten in recent years with The A word, The Good Doctor, Atypical and the Accountant among others all being released to media praise, and a backlash from autistic people. It normally goes something like this: The show/film comes out and gets widely praised for having an autistic character, autistic people let themselves hope it will be done right, watch the show/film only to find out it`s been badly done and is mostly just stereotypes, and react badly to it. We write blogs and post online about why the film/show is getting things wrong, and urge people not to take what that program is showing them as a realistic image of what autism is, then the show`s/film`s creators respond by saying that the show/film is not meant to represent everyone with autism, and can not tell everyone’s story, and that’s the end of it until the next show/film.

Firstly to address some of those points: of course each show and film can only tell one story, and is not meant to represent everyone, but some of the stories we see in film and T.V. do not seem to represent anyone; they are just stereotypes brought to life on screen. Plus you only have to look at the Rainman effect to see what power films and T.V. have over how people see autism and autistic people. Even now, well over twenty years since its release, it is still one of the first things some people go to when they think of autism. It`s not that it`s a bad film, it`s just that lots of people don’t want to look any further in to a subject once they have seen one film or T.V. show on it. They think they understand it now and can talk about it like experts. The truth is autistic people understand that one show or one film is not going to show everything there is to know about autism, but sadly a lot of non-autistic people do not seem to understand this. Therefore those shows/films have a power that most others do not; they will help shape and create non-autistic peoples` views and perceptions of autistic people for years to come.

So when a new T.V. show comes on the air autistic people tend to have a mix of feelings; we want it to be good – why would we not after all? But we also worry that it will be bad. If it is bad then some of us will feel we have to react to it; to keep watching through the cringingly bad attempts to show how autistic people talk, think and feel, to keep watching even if it passes the point of being offensively bad. And sometimes it is worth doing that – you can`t write about something or hold it to account if you have not watched it. You can dislike an idea, but to call out a show or film you do have to sit down and watch it. You have to think about why it`s bad, write that down, edit it and post it somewhere, and that’s the thing – sometimes it just does not feel worth while doing that.

It is always worth autistic people speaking up and challenging poor portrayals of autism on T.V. If we do not do this then who will? And like I said those portrayals, if left unchallenged, will dictate how non-autistic people view autism. But still, having to watch through them can sometimes be trying. It`s hard enough to have to watch bad films and T.V. without falling asleep or drifting off to find something better to do, but when you have to watch bad TV/films that also try and fail to show autism it becomes even harder to get through. It`s hard to put the feeling in to words; it`s not always that things are offensive, although sometimes they are, it`s more that it can just be downright painful to watch sometimes. I am sure we have all seen a film or T.V. show that got stuff badly wrong when showing autism, and if you have then you will know the feeling I am talking about.

It can feel like autistic people are having to say the same things over and over again when talking about how autistic people are shown on T.V. We pick up on the same issues time and time again, and talk/write about them, and yet not much seems to change.

So is it worth watching and reviewing these shows/films?

It`s always worth talking and writing about how autism is portrayed in film or on T.V. Even, or perhaps especially, if it is a bad portrayal. Of course anyone can review anything, but the views of an autistic person must hold more weight when talking about autism on screen. That being said no one is ever obligated to review a show or film. Once you start writing about things like that it can start to feel as if you need to watch everything to keep up with what’s going on, and give your views on every new T.V. show that comes out. But you might not want to; you might be fed up of watching TV/films that frustrate you, but also you might just not have time to keep up with everything. Right now autism is a pretty big deal on T.V. There are new shows coming out about it all the time, and it would be hard for anyone to keep up.

In short yes it is important for autistic people to speak up if we see a bad, negative, or flawed image of autism on T.V. and also to say when people get stuff right, but it`s also totally understandable if we need a break from doing this from time to time. I will try and catch up on The A word, and despite my talk of bad portrayals of autism on T.V. I will keep an open mind going in to it. And while I can`t watch and talk about every show that deals with autism, I do try and read as many reviews of these shows by autistic people as I can.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Why I have not been writing.

As you might have noticed I have not been blogging much over the last few months. I did write a post about this a while ago talking about why I had not been writing, how low my mood was and saying I was going to try my best to get back in to writing and blogging, but as you can see things have not quite gone to plan. There is no point going over those issues again too much, but I thought it worth addressing as I am trying once more to start blogging.

As you will know if you have been keeping up to date with my blog I have been finding it hard to write, or in fact hard to do much of anything for quite a while now. This has been due to a mix of overload, depression and family issues. Back in August when I first wrote about these issues I did mean to start blogging again, once a week if I was able, but it did not work out that way. I have been finding it hard to get rid of my overload, and have been overloaded almost constantly, to the point of not being able to do anything. I will write about this as an issue on its own as it’s still on-going, and there is quite a lot to be said about it. But I am sure you can understand that if I am so overloaded I cannot even think straight, or sit down to relax, that writing,editing and posting a blog has been beyond me for quite sometime.

It is something of a vicious circle as not being able to write has only added to my low mood. For years I was sure that I wanted to be a writer, that writing was something I enjoyed and would always want to do. But when my mood dipped, and I was so overloaded I could not even think about trying to write without feeling worn-out, and fuzzy-headed, some of that belief started to leave me. It’s hard to make a living out of writing. I don’t do that now and I never have done, but my hope has always been to one day be able to make enough money from my writing to live off. Even though that’s hard when you are getting up early every morning and writing two thousand words a day, posting blogs every week, editing one novel while writing another, and having articles published in newspapers and magazines, it is easier to imagine. When you get to the point where you are hardly writing, you are not posting your work, and you are not even thinking of good ideas – or if you do think of an idea you do nothing with it – then it becomes harder and harder to think that you will ever make a living off it.

When I decided not to go back to university it was so that I would have more time to write. At the time it was a good idea; after all, I wanted to be a writer so what was the point in using the time I could be writing to do something else? But then when I became unable to write confusion set in; if I was not using this time to write had I made the right call? I had made a choice, uni or work, and I had chosen work only to find I was not doing either! Now on a logical level I can say to myself that knowing the way I have been feeling the past year or so that university would not have worked for me. As I say I have been too overloaded and depressed to even pick up a book or watch a film a lot of days, let alone go to university. So whatever I had chosen I would not have ended up doing due to my mood.

But even so doubt starts to set in. The more I think about it every job I would want to do involves writing, and I have been writing in some form or another since I was six years old. I have a book published, have co-written two other published books, and have written over one hundred articles so most of my life – certainly any part of it involving work – has been centred around writing, and being a writer. So when I suddenly stop being able to write what am I meant to put in its place? What am I meant to work on? To aim for? It puts me in a place of uncertainty, and casts doubt on plans I have been working on for years. And we all know that change and uncertainty are not good for autistic people. That’s not the only impact – writing is like everything else; if you want to be good at it you have to work at it and do so often. You can not just write once every few months, and expect what you write to be good. Even looking at my writing here I can tell it’s not my best. That being said I do not judge myself too much on my writing in blogs. I feel they are less formal and I tend to worry less about the style of my writing. But the point still stands – if you want to be good at something, at anything, you have to do it as much as you can. Taking breaks for months at a time is never going to have a good impact on your writing skills.

So I can’t write because of my low mood and the less I write the worse I feel.

I have been working on lifting my mood and cutting down on my overload quite a bit over the past few weeks, and I will write more about how I have been doing that, and how it has been helping. You can see of course that what I have been trying has been working somewhat as I am writing this now. Although it is only one blog that in some ways is just going over issues I have already blogged about, or setting up blogs I plan on writing, but have not written yet, I am still glad that I was able to sit here and type it out. It might not be a lot when compared to what I used to do, but compared to what I have been doing most days for, well for most of this year, which is absolutely nothing, it is a lot. But how ever much it is I am just happy I have been able to write something, and I plan on keeping it going. My aim now is to write something, even if it’s only a few lines every day, from now until the end of the year, and then take stock in the New Year and see where I go from there. Things are still hard in lots of ways, but I feel more upbeat about them now than I have done for the last few months.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Autism, and why I haven`t been on social media recently …

I have been trying to do ASK-PERGERS? a bit over the last few days, and posted a blog a few days ago, but before that I had not done any work or even logged on to ASK-PERGERS? for about a week. I run ASK-PERGERS? with my Mum so you might have seen a few things being tweeted out by her in that time, but I was not on at all. And it was not a planned break; I just ended up not going on, and not working on my writing for a week. So why was this?

The whole point of ASK-PERGERS? is that I talk and write about autism; I write about the positives of it and what I enjoy about being autistic, but also the negative side and those things that I find hard. If you have a blog and you want to grow it you need to post regularly, the same if you want to improve your social media presence. I want to grow both the blog and our following on social media – and it’s not that I plan on making a lot of money by doing this, that’s not how it works – but of course I want to connect with more people, and get my writing out there as much as I can. Like I say to do that you need to be putting some work in most, if not every, day and yet by the very nature of being autistic that’s not always easy to do. When I am stressed, overloaded or struggling to be able to do anything due to lack of routine, or underlying worries it can be hard to find the energy to even log on to social media, and find things to share. Or my mind is just so overloaded that I don’t even think to do anything on ASK-PERGERS? The week I had away from my writing work recently was a mix of those things. I have been finding it hard to make and stick to a routine. I was trying one, as I put in another blog, but due to some underlying issues it’s been hard to stick to. That has been throwing me off, and meaning that for quite a while I was getting up unsure of what to do; feeling stressed and overloaded with nothing to bring me down from that. Because I did not have a routine I found myself going to bed a lot later each night. I have found if I don’t have plans for the next morning I will just stay up until I feel so tired I have to sleep. But I don’t sleep in much in the mornings so this leads to me being much more tired the next day, which in turn makes it harder to plan the day out, and stick to that plan. For a lot of the time doing ASK-PERGERS? just did not come in to my head, and when it did I was so tired and overloaded that I just did not find myself wanting to do it, and would put it off and forget about it again.

I don’t want to make a big deal out of the fact that I did not go on social media for a week; I know that it’s fine, and I can just pick up from where I left off, and that’s what I have been doing. But I just wanted to call some attention to the fact that sometimes even things that seem small, like going on to Twitter to work, can feel so overwhelming that they end up being left for days on end. And no matter how important something is to you, sometimes overload and stress make it almost impossible to do.

As I say I did not plan to take a week off; in fact most days I thought that I had better do some work on ASK-PERGERS? but it just never happened. In itself it’s not a big deal, but it is a good example of how things can slip away. Once something starts to feel stressful, or I start to feel too overloaded to do it then it can easily run in to weeks before I am able to get on with it again. It’s a strange thing that the very nature of what I am writing about can make my writing, and work on social media, hard, but that’s how it is. But then again it works the other way around too; of course now I have gone from finding it hard to write, and do work on social media to writing about finding it hard and posting that to my blog. Not doing ASK-PERGERS? for a week is just one example of how things can drift away and get left if I feel overloaded, or do not find a way to work them in to my routine. If I have a good routine or plan for the day, and know what I am doing and when and do not allow myself to get to the point of being too overloaded, then I can be quite productive day to day. But if things are not planned out well, or I am having a day where I am overloaded or overly-stressed then I can often end up doing nothing at all, not even the seemingly small, easy things that I enjoy and want to do.

PS: I wrote this blog last Monday and yet I am only just getting around to editing and posting it now. But it is still as true now as it was when I first wrote it. I ended up taking another break from social media for around six days due to a mix of the same reasons talked about above. I think the fact that it took me so long to be able to work on this blog again, or even think about it after it was written, just helps to back-up what I say in it.

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